Wednesday, December 19, 2007

Day +204

WBC 4.1 K/uL
RBC 3.74 M/uL
Hemoglobin 12.3 G/dL (woo-hoo!)
Platelets 402 K/uL
ANC 2.95 K/uL

Nancy, I'll trade you red blood cells for platelets and a small container of chocolate pudding.

I have to apologize for not posting sooner, but I was in a snit when we got home from Houston last night. The news I got was mixed and I could see that Chris was really getting worried over it and to add to all of this, we spent ten hours collectively traveling. So we were tired and fretful.

My blood numbers continue to be normal, or very close to. My magnesium levels are finally stable. My liver enzymes are another story. They were elevated last week--just slightly above the high range of normal. This week they were the same, more or less. Chris was hoping that the massive doses of anti-viral medications that I was taking the previous week were the cause. Guess not.

Dr. Kebriaei was cautious about what the numbers could mean and rightly so. It could be anything from medications to GvHD of the liver, or it could mean that the PTLD never fully resolved. The levels of Epstein-Barr virus in my blood were slightly elevated and this concerned my doctor. It's not a very good situation to be in since a wrong diagnosis could cause significant trauma.

The treatment for GvHD of the liver includes systemic steroids which would suppress my immune system further. This would give the EBV in my system a chance to flare up in turn bringing back the PTLD. The treatment for PTLD would be more rituxan, but if I really had GvHD of the liver, it would mean that the condition would get an opportunity to get worse while I was being treated for the wrong thing. I'm damned if you don't and damned if you do.

In two weeks, I'll return to Houston to be reassessed. I'm hoping that my numbers go back to normal and if not, I'm prepared to do whatever I need to.

The results from my lumbar puncture were in and according to my doctor, I have nothing to really worry about. Chris was hanging from the ceiling. The pathologist who looked over the sample found rare abnormal cells that were non-malignant. I've been reassured that with the number and frequency of lumbar punctures that I'm having, that this was bound to happen. Repeat after me: "Non-malignant." The explanation was that they were mis-shapen cells of no particular type. Okay. As far as I know, the cancer is still gone and my doctor wasn't fretful about it.

The dermatologist was very pleased with the way my skin has responded to the steroid cream she prescribed. The skin on my torso is almost normal and I hardly ever itch. I've been told to to reduce the number of applications over the next two weeks so that I don't thin my skin further. The skin on my fingers has gotten very thin and has split across every knuckle. It still beats being itchy and miserable. I've been advised that dry skin will be a way of life and that I must moisturize every day. I'm faithfully applying Eucerin and Cerave everyday, but I have to admit that I feel like a baby's bottom slimed with diaper cream. It doesn't help that the Eucerin cream is white and very emollient. Yum-yum. The Cerave is quite nice, though.

The opthomalogist has confirmed that I do have GvHD of the eyes. After performing a test where small strips of paper are left to hang out of my eyes she informed me that my tear production is normal and that my eyes aren't "dry" at all. It turns out that they are inflamed from the GvHD and that's the reason for my discomfort. I have to apply steroid drops everyday for a month and I also have to apply cyclosporine drops twice a day. To cap things off, there's an anti-biotic ointment that I have to put in my eyes before bed time.

Imagine it if you will, me trapped in my room, essentially blind thanks to the ointment and desperately trying not to rub up against anything because I'm slimy and sticky with moisturizers. It's really kind of funny when you get down to it. The cats take full advantage of my situation by taking turns rubbing against any exposed skin, leaving furry little tracks behind. It makes me crazy!

All in all, it wasn't all bad news, and if I'm very honest with myself, none of the news we received was bad. All of the doctors consulted with one another and concluded that I wouldn't have to go on oral steroids for my GvHD. That's a plus, and my eyes already feel better after just a few treatments.

We forgot to mention that we ran into a friend from leukemia last week. Mr. Clark of the tiny metal steer fame surprised us while we were at the stem cell clinic. We had the same leukemia doctor and would often entertain each other in the waiting room between appointments. We were surprised to find out that he was going to have a stem cell transplant and was in fact being admitted to the hospital that very same day. He's going to have the same procedure that I did with an expanded cord. Yesterday we got a chance to visit him in the hospital.

For once I didn't mind putting on a floppy yellow gown and gloves. He's in isolation because his marrow has been burned from his body and he has no immune system. He looked amazing and reported that he only had a few side effects. The transplant is scheduled for tomorrow and we're praying that it goes as well as mine did. I warned him to ask for extra blankets since the stem cells will be fresh from the freezer and pumped in cold. I hope we'll be able to see him the next time we're in Houston and it just made me happy to see him doing so well. As a bonus, we got to visit with several of the nurses that cared for me during my many stays.

I will always be grateful to the many people that cared for me and continue to do so while I recover from this. Just as I will be forever grateful for the many people that continue to encourage me and send they're prayers for good health. It means so much more than you will ever know.


Anonymous said...

Oh, Ann,

I know that there will be setbacks here and there, fortunately these recent ones seem to be somewhat minimal or the doc's would have held you there. You will overcome these setbacks as well. I'm sure that things will be resolved in a positive manner. Overall, it sounds like things are going very well.

Just so you know, I am returning home to Baton Rouge before the end of the month. I know we don't know each other and have never met, but I would like to meet you. My plan is to stay in BTR until I find a job in Houston, so I should be in BTR for a while. I'll contact you via email when I am home and settled.

I look forward to finally meeting you.

Love and Prayers from out West....temporarily!!!!!

Nancy said...

What are you talking about girl?!!! I can't trade rbc's. Mine are almost exactly at the same place that yours are at!!! But, you can loan me some platelets.... I'll gladly trade for the chocolate pudding. Keep up the good work. Your counts are amazing! I'm glad the skin GVHD is subsiding. It's amazing what the steroid cream will do for you. Stay Warm and keep away from germies. Have a great holiday... Life is good!!! love, nancy

pj said...

The main thing is, there's no leukemia. Hip hip hooray! GVHD, though nasty sometimes, can be treated, and it sounds like yours has been relatively mild. Let's see what I say when I get some ...

I hope you and Chris enjoy the holidays and manage to keep stress at bay. Here's to a HEALTHY New Year!

amy t. said...

I am finally caught up on reading your blog! All I can say is that being able to read your posts is a wonderful Christmas gift. I am so happy about your progress. Keep it up... much love to you and Chris!